As this story is making its rounds through the media, it's also providing hope to those of us in the alopecia world who live with the psychological and social effects that come with it. It's exciting to think about the future of alopecia treatments. Since a scientist discovered the gene for alopecia just a couple of years ago, (which was a HUGE step!) lots of research, clinical trials, and progress have come in its wake. It's also neat to think that Caroline's blood sample we sent in three years ago to the national alopecia registry can be helpful in continuing research towards a cure.

Good stuff!

But as crazy as this may sound, along with this encouraging study (which was only performed on one individual, let's remember, though there will be clinical trials beginning soon) comes a bag of mixed emotions for me personally.

It's not that I don't want there to be a cure. Certainly I do.

But this drug isn't a cure. It's a treatment. A hopeful treatment!, but another treatment nonetheless, to potentially add to the accepted list of immunosuppressant steroid creams, injections, and pills that alopecia patients already have the option to endure.

I'm so thankful for the extremely strong and active foundation in the alopecia world, NAAF, and while they are encouraged by the study, here's their reaction:

While we remain hopeful, we wish to remind the alopecia areata community this is a preliminary study with the effects of the drug studied on only one individual. It should be considered preliminary and not validated at this point, and remains to be further studied in clinical trials. We encourage the researchers at Yale to pursue a clinical trial and are excited that a clinical trial with this drug will be starting at Columbia University this summer.

Doctors don't know alot about alopecia, and there's no predictability in the condition. Hair can regrow and fall out whenever the immune system decides. One pattern that doctors have learned is that the earlier you lose your hair, and the more extensive your hairloss, the less likely you are to experience any regrowth. That may be particularly important to find in this study, because the patient lost his hair at age 20 (only 5 years ago), which made him more likely than someone like Caroline, for instance, to experience regrowth.

So I guess you could say I'm cautiously optimistic about the future. I'm so curious to see what they'll find and what will happen in the years to come.

Meanwhile, can I just say I'm in the everyday trenches with alopecia?!

I'm dealing with the deep insecurities it is digging within my daughter's heart.

I'm staying up late by her bedside the night before day camp to practice what she's to say to someone who stares at her or asks about her baldness.

In public, I'm Mama Bear, constantly scanning the scene around us, aware of the stares and reactions, and either I'm intentionally smiling back at you as your jaw drops when you see my kid, or if need be, I'm giving the stink-eye right back 'atcha. I try to appear cool and collected when my Caroline is with me, but you better believe Mama Bear is always on high alert.

Being a mother is a full time job. I feel like alopecia adds an extra part-time job into the mix.

It's hard. When I think about there being a pill or cream that could just instantly take all of that away, it would seem like a no brainer. Right?

But in other ways, alopecia (and the journey to accept it) has been so richly rewarding. Though others may see Caroline's baldness as a flaw and weakness, I can't believe I've come to see it now as a strength. The world would see it as taking away from her beauty. I see how it adds to it! I'd have never asked for it, but Caroline wouldn't be who she is today without alopecia. It's a part of HER now. (You don't even know how crazy it is for me to say that.)

I have grieved and mourned the loss of the daughter with hair. I used to ask God to bring that girl back. To bring her hair back. Now that doesn't even cross my mind. (We have lots more things to pray about than some silly hair regrowth! haha!)

I was and still am prepared for a life with baldness. So the thought of having hair again is...jolting, I guess. It raises more questions for me and for us in the future, but thankfully Caroline is young and we don't have to make those difficult treatment decisions until she would be old enough and ready.

Within the alopecia world, there are different ways of handling the auto-immune condition. Some pursue treatments and some don't. Some wear a wig and some don't. Some fight it and some accept it. Some hate it and some wouldn't want their hair back even if they could.

God has brought me from such a far Point A (fighting and hating alopecia) all the way to the distant Point B (accepting and even embracing alopecia), and I know that regardless of what our future holds, (hair or no hair) He will be with us every step of the way.

And the next time she'll be in a cap and gown?
I don't even want to think about it.

The moment for which I'd overheard her practicing in the car.

Shake with the right, grab with your left. And don't forget to smile.

Photo op with the headmaster. (who, by the way, also happens to be a dad to two black sons! Cool, huh?)

Watching kindergartners trying to move their tassels over is pretty hilarious business.

Congratulations, graduates!

Now we can't possibly talk about kindergarten without a little raving about Mrs. Haley. I will try to control myself and limit my words, but there is no doubt in my mind that God couldn't have picked a better teacher for my sweet Caroline. (also an adoptive mama herself!)

Caroline is so sad to lose Mrs. Haley as she moves on to first grade. Well, good grief, if we're being honest here, I am pretty sad to lose Mrs. Haley, too.

Some of our former students (who are practically family!) came to show their support.

Thursday, June 12, 2014

Oh man, I'm loving the reactions I get from locals when I tell them we've moved downtown.

"Oh...?" they seem confused. Like, Why would you do THAT? "What street?" they ask.

Maybe they're expecting me to call out one of the presidential street names where there are million dollar homes and plenty of gentrification. Maybe then it might help to justify such a stupid decision to move our family there.

Half-anticipating and half-dreading their response, I tell them. I know it's not going to gain me any popularity, so I'm already trying to smooth over the awkwardness that I know I'm often creating.

"Mmmm," they respond, usually keeping their thoughts to themselves. They're probably thinking what a good friend of mine was bold enough to say: "Oh wow, yeah, that's really the hood!"

Yep, that's the stereotype of my neighborhood. But here's what's funny-- people will call it the "hood" all day long, and yet, when asked, it's almost like no one has ever been there!

It seems like there's quite a gap between people's perceptions verses the reality of an actual place.
Everyone that's come to our house (oooo, that's even dared to drive in.... ha ha!) is pleasantly surprised at what they see. A beautiful, quiet historic neighborhood. It's great! We love it. I feel completely safe.

It raises the question: what is it specifically that makes a place "the hood"?

Is it drugs? Outright fighting on the streets?

Statistically, there are no more drugs in my current neighborhood than there were in my predominantly white one. I heard fights through the open windows of my white neighborhood, too. For crying out loud, I'm sure my family of four contributed our own arguing into the mix... ha!

So far, in just a week or so of this "hood" I live in, we've met all of our neighbors, which didn't happen in six years at our former one.

Is it the presence of black people or black culture that makes a place a "hood"? Is it the presence of the poor? Yes, my neighborhood has all of that, too. When you visit, you will likely see someone walking home on the side of the road or a group of guys playing basketball at the park across the street.

What makes a place a "hood"? Might the term "the hood" reveal something more about our hearts, about our fears, about our prejudices than that which we're describing?

Might it say less about the actual place itself than it does about US?

Might it reveal our own false perceptions and inabilities to see beauty and the glory of God on display in environments different from our own?

As with most of cities in this country, our downtown had its hay-day decades ago. Businesses were thriving, and huge, beautiful homes were occupied around this cultural hub of the city. But you know the story- when the wealthy white people began retreating to the suburbs, businesses quickly followed them, largely abandoning our downtowns, leaving many of the poor and elderly still there. Large, beautiful historic buildings sat empty for years waiting for someone to invest in them again.

And in recent years, we are seeing downtown revitalizations happening all across the country. People are coming BACK to the city. (though I'm not sure I'm a complete fan of gentrification because of how it pushes out the poor)

Around our little city of Lynchburg, many of the locals hardly see downtown as desirable.

They can't see what a treasure they have!

But there is new life. Things are happening and the city is pouring in money. Southern Living recently featured downtown Lynchburg in an article, calling it your "next great neighborhood."

This won't be the same place ten years from now.

For a small city, it's a real downtown, with beautiful old colonial brick buildings and churches with steeples that soar into the sky. It's got dining and shopping, and a city market as its hub.

It sits along the beautiful James river.

It's a place where trains blow their horns and go clackety clack down the tracks.

It is home to an amazing system of walking/biking trails.

Eight miles of paved trails!

I can't believe my children get to grow up with all of this practically in their backyard. Our home is a short 3 blocks away from accessing the trails.

Like all places, downtown is also a place filled with real brokenness, too. A place screaming with potential, but a one in need nevertheless.

I still deeply love our house in the suburbs, but there's something so beautiful about returning to the city.

About believing in a place that others in the past have abandoned.

About finding beauty in the old and broken, and working to restore, transform, and revitalize.

Afterall, that's what Christ did to our hearts... he brought life to what was once dead.

That's what Christ does in our lives... he is always working in us, investing in very needy people, transforming us to be more like Him.

And that's what Christ will do in the future... as all of creation groans for redemption, one day He will bring a new heaven and a new earth to this very place. Every square inch of this earth belongs to Him, and one day, even the most dusty, uninhabitated, abandoned building will be revitalized unlike anything we have ever seen. (Doesn't that add a measure of excitement to all the current downtown renovations, my fellow Lynchburgers? It's a small picture of future glory!)

In the Bible, heaven is spoken of as a CITY. A new Jerusalem. With rivers of wine.

Here's another important aspect we moved to the city FOR that sadly, caused most others to move AWAY:

It's a place that looks more like God himself.

Collectively, we are made in God's image. God created us in many shades and skin tones to reflect HIM.

We lose this beauty when we primarily live life with only those that look like us.

To see color, to embrace color, is to see and embrace the image of God himself.

It's important for Christians to do the difficult work of realigning our hearts to love what God himself loves. We've got to reevaluate our stereotypes and fears to bring them in line with the Gospel. Because of Christ, believers can see beauty in things, in places, and in people that the world around us simply cannot.

That doesn't mean everyone is called to pack up and leave the suburbs. But some, like our family, are.

There's so much to love about our city. There's so much to love about your city, too.

About Me

After many years of praying for a child, God gave us a precious little girl named Caroline through the gift of adoption. This blog is designed for friends, family, & Caroline's birthmother, Megan, & her family to keep up with what's happening in Caroline's life. It's also a way for us to chronicle our story as God works in our little family.
Originally this was a blog about adoption. (if you haven't read our first adoption story, please do so! it was amazing!) Little did we know that God had other things for us to blog about such as life with alopecia and gluten-free eating. We've also just adopted again, this time transracially to sweet baby Jameson. We're still processing and learning along the way, but we invite you to join our journey as our story unfolds.